Restless Legs Syndrome (RLS) Discussion Board

Hi everyone! So glad to have found this place!

I’m a 31 yr old mama of two energetic little boys and have had RLS, I think, all my life...but only recently discovered it was a disorder when things started getting worse.

I went to the dr and found out my iron is very low—so I’m taking supplements twice a day and will be retested soon. Do you know of any other tests I should request?

He also prescribed Klonopin to help me sleep, as I’m having a terrible time (especially since my boys don’t sleep through the night yet either...and one is giving up his nap..sleepy mommy!). Klonopin helped for about a week and then seemed to actually make my legs worse while not doing as good a job making me sleepy. So I quit taking that and thought I’d try some self-help stuff...but my legs still seem worse and truly, I don’t have enough energy to have fun with my boys and also research a bunch.

The last week has been really bad—my legs have always been odd, but lately the sensations have become painful and moving doesn’t give as much relief as it used to. I’ve tried heat, massage, and pain meds—the pain meds seem to help some and I was able to get some fitful sleep...but not much.

So, yeah, I’m a little overwhelmed right now. I like my dr a lot, but I’m not very confident in his RLS knowledge. I’m going to call him today and request something to help my legs/sleep and was wondering if anyone can give me their opinion on what would be best to take.

I’ve read that your risk of augmentation with the dopamine drugs is higher with low iron, and I’ve also read that it’s not a good idea to take opioids with low blood pressure (which I have)...is that true and would it be best to avoid those???

Anyway, I would just feel more confident taking whatever new, scary drug is prescribed after hearing from some people who have been there before. The list of side effects for all these meds really is intimidating...

Thanks so much...did I mention I’m glad I found this place

hi moma liz--great handle!

Glad you found us too--sorry you need to though.
It's great you found your iron is low. Is that the ferritin test or regular iron levels? If it's not the ferritin test you should get that done at some point. You are looking for it to be over 100 for rls folks not over 20 as is the norm for others.
You mentioned your two boys, they seem like youngsters (we have 2 boys as well) did your rls get worse through your pregnancies?
Some folks find relief when they get their iron levels up and as time passes after child birth. Here's hoping you are one of those.
The other option is being genetic and just having to deal with it till there is a cure or something found.
For those folks medication is key to getting sleep. Your question about the blood pressure is a good one--I wish i knew the answer--I would ask your Dr about that though. In my experience the BP rises but every med is different. Have you looked at the medication list on the rlsf site?
http://www.rls.org/Document.Doc?&id=2112
Your doctor may want to try something like gabapentin first or a combination of that with tramadol before using the other opiates.
Good luck with it and keep is informed.

Welcome to the site.

I would echo with rthom's post. Would suggest that you get your ferritin level checked as soon as possible. It isn't done in the routine blood tests so you may need to request it. Your normal blood iron may eventually read as normal but at the same time your ferritin can still be too low i.e. under 100.

It will be wonderful if your doc is wiling to be educated and the link in my signature will provide good basic information for yourself and is also very useful to give you your doc, I hope doc is obliging in this regard and is willing to learn.

Also with regard to sleep, klonopin may help you to sleep, but it is not going to work to full benefit if you are having symptoms at the same time. Sleey/exhausted is not good if your symptoms are running riot and you are walking the floor. !!

Am I understanding correctly that you are not at present taking any meds for WED/RLS.
The document in my link goes through the different medications and when they are suitable.
Usually starting with a DA, also the anti seizure medications. etc.

What pain meds are you taking that are giving some relief?

Sounds like a tough place to be.

Good advice so far.

Both having low blood iron (hemoglobin) and having low ferritin can worsen RLS/WED. Getting that hemoglobin up is VERY important because that alone may reduce your symptoms dramatically. It could be that your iron level dropped in the last few months, making the WED worse.

The ferritin measure is the one related to taking the DAs - you want it at least 50 and preferable 100 before you take the DAs. This is a measure of the iron stored in your body. Many of us are low in this area. You can be low in both areas, though, which can compound things.

What other things are you taking - for anything? Vitamins, OTC drugs, alcohol, anything at all.....sometimes these things can cause problems. Any other health conditions - celiac, diabetes, pregnancy and many more things can contribute to worsened WED.

Thanks so much for replying.

My dr called back and prescribed gabapentin, just as rthom guessed...here’s hoping it helps tonight. He said he didn’t test ferritin levels, but we can once I’ve been on supps for a while. He may know more about wed/rls than I realized, which is encouraging. If not, there is a sleep specialist in town so I can always go to him.

Am I understanding correctly that you are not at present taking any meds for WED/RLS.
-yeah, the klonopin was our first attempt at a medication. In the past, I slept poorly, but never made the connection between my sleep and my legs...and was able to compensate for lost sleep with naps and early bedtimes, weekends, etc. But now, with my little guys, whew, I’m burning the candle at both ends...

What pain meds are you taking that are giving some relief?
--Just tylenol and ibuprofen. My legs have always felt odd, maybe even uncomfortable or achy, but lately they’ve been painful. The pain relievers help with that, though they don’t help me keep still and sleep...

b]You mentioned your two boys, they seem like youngsters (we have 2 boys as well) did your rls get worse through your pregnancies?[/b]
--yeah, it did, but I didn’t know at the time it was rls...just thought my arms and legs were going crazy. Nursing was really bad b/c I’d try to stay really still so the baby could fall asleep...seemed impossible and so uncomfortable. Thought it was getting better, but I guess I kept using up iron every month and just haven’t been able to get on my feet.

I’m still in rather in shock about the whole disease. Still can't believe there are people out there with legs as weird as mine...sad, but also very comforting. And it’s nice to know there might be a way to get some good sleep as I’ve never had that much before...

ViewsAskew wrote:
The ferritin measure is the one related to taking the DAs - you want it at least 50 and preferable 100 before you take the DAs. This is a measure of the iron stored in your body. Many of us are low in this area. You can be low in both areas, though, which can compound things.

What other things are you taking - for anything? Vitamins, OTC drugs, alcohol, anything at all.....sometimes these things can cause problems. Any other health conditions - celiac, diabetes, pregnancy and many more things can contribute to worsened WED.

Thanks so much, that's good to know about the DAs. I'll make sure to get my ferritin checked before taking them...if the seizure meds don't work. I'm not taking anything but my thyroid meds for a slightly low thyroid and have hypoglycemia, but I control that with diet so it's not a problem much anymore. lol, seems I have low everything, low blood sugar, thyroid, iron, blood pressure...no wonder I'm always sleepy

The hypoglycemia reminded me of a member we had many years ago. She reduced her WED and found it related it to her hypoglycemia. The research related to it is shown here:

viewtopic.php?f=1&t=1902

For some reason, people with diabetes have a higher incidence of WED. Could be that for some people blood-sugar levels kick off a reaction. That's just a supposition on my part.

I have a 2 year old and feel your pain! Literally! My son sleeps through the night. But, he wakes up VERY early every morning.

I was just diagnosed with RLS last week. I've had constant symptoms for 2 months. But, I realize over the years I was having some issues but they were so intermittent that it was nothing that got to me too badly. I was taking a narcotic pain killer to help me. But, I read that those types of medicines can make your symptoms worse. I am currently taking mirapex. It's not 100% helping yet. But, I am hoping when the doctor keeps increasing my dose that it will help completely. My sensations are super painful.

Are you seeing a neurologist? That's where I've been getting all my answers. Maybe that will help.

This thread was started several months ago - I hope the original poster will see it and respond.

Welcome to the board. Like you, I had intermittent symptoms for years before it was constant.

To my knowledge, narcotics will not make WED/RLS symptoms worse. Many of us use them exclusively for control!

Sounds like you have the painful version. People with pain often find gabapentin or Lyrica to work well.

I didn't even notice that this thread was started so long ago. Oh well.

I'm in the beginning of my treatment. So, we'll see if this medication works. I really don't want to take a narcotic all of the time. I read in the pamphlet that comes with the mirapex that certain narcotics and anti depressant and anti anxiety medications can make it worse. I have tramadol at home. So... can you take mirapex and tramadol at the same time. For instance... both before bed?

I take requip/ropinerole which is the same class of drug as mirapex and I also use tramadol and codeine to supplement.
Antidepressant medication can make RLS/WED worse, but if by anti-anxiety medication you mean the like of diazepam, diazepam should not make the symptoms worse.

Newlydiagnosed331 wrote:I didn't even notice that this thread was started so long ago. Oh well.

I'm in the beginning of my treatment. So, we'll see if this medication works. I really don't want to take a narcotic all of the time. I read in the pamphlet that comes with the mirapex that certain narcotics and anti depressant and anti anxiety medications can make it worse. I have tramadol at home. So... can you take mirapex and tramadol at the same time. For instance... both before bed?

I think their information is a bit one sided! They are right that some medications can make it worse. Opioids are not one of them. The ones to watch out for are anti-depressants, older anti-nausea drugs, Benedryl, and antipsychotics. I can't recall any narcotics that make it worse, but I could be forgetting something. Anti anxiety - hmmm - wonder what they mean? Not sure about that, either.

Many people take Tramadol, as does Polar Bear, with another class of med, including the dopamine agonists (Mirapex and Requip).

The big issue with Mirapex (and Requip) is that you really need to have good levels of serum ferritin if you use it. If you haven't had this test, please ask for is ASAP. Studies are showing that people with lower ferritin are more likely to have difficulty with these drugs. They can cause augmentation - when the symptoms are worsened because of the drug you're taking to make it better. Many of us have been there and it's NOT fun.

My doctor did order that blood work. Going soon for it. If my symptoms get worse I'm going to FREAK!! I'm already at my breaking point. I guess I just get nervous about mixing medication. I'm also afraid I won't get out of bed in the morning for work since they both make me so tired. I do take them early enough though. I have to patient. But it's so hard!!!

Please read up on augmentation, which eventually happens to about 75% of people who take dopaminergic drugs for RLS/WED for a number of years, and is bad enough for them to quit the drug in about 20%. (Information from Allen and others, Sleep Medicine 12 (2011) 431–439). Just be aware of what it is, so you know if it happens to you.

Augementation is a paradoxical worsening of symptoms caused in some people by the dopmainergic drugs (Sinemet/levo-carbidopa, Mirapex/pramipexole, Requip/ropinirole). If you have augmentation, your regular evening dose still works, but you start developing symptoms earlier (before you take it), or in more body parts, or you get more severe symptoms. It is very likley to happen in people with low ferritin levels, and is more likley at higher doses of the medication. It is also more likely the longer you've been taking a dopaminergic drug. Once you have it, increasing the dose increases the augmentation. Sometimes it can be controlled (for a while anyway) by an additional, earlier dose.

I'm new to this site and have read others narratives about RLS and I to have this unbearable diagnosis I have taken about every medication that a Doc can give and I still am up every nite till I finally pass out due to exhuastion. The one thing that i am going to have my dr. do is the ferritin test. I have had low iron forever but until I started reading all ya'll post I had no idea that the low iron could be the issue. I even tried what one person posted with the vicks vapor rub. That just didnt do anything for me. But I am currently taking clonazapan which worked for years however the body gets accclimated to most meds and then you have to increase the amount or try something else. Requip for me was a waste of money and gabapentin did nothing. I talked to my neurologist and he stated that if him and I could find a cure that we would be rich. So I am at the end of my rope with meds and supplements. I hope that the ferritin will prove successful. My quality of life would be so much better.